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Does anyone have B-cell prolymphocytic leukemia (B-PLL)?
Blood Cancers & Disorders | Last Active: Nov 14, 2022 | Replies (188)Comment receiving replies
Hi Phyllis, I add my welcome. Fellow members @cormac @81ue, @achris and @zellheff know first hand what it is like to live with B-cell prolymphocytic leukemia (B-PLL). I'm so thankful to @81ue for having started this discussion dedicated to B-PLL. She remembers well when she was the only person talking about this diagnosis. Because of her, new members with B-PLL no longer have to deal with this diagnosis alone.
Phyllis, I'm glad to hear that you are tolerating treatment with imbruvica well. Do you have any questions you'd like to ask others?
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My hematologist is saying at this point that I will be on medication indefinitely. Has anyone been able to stop medication when and if scores reach normal?
I'be been fortunate that the cancer center got a grant that has covered the cost of my Imbruvica ($425 per pill @ 1 daily) from Dec 2020 to May 2021. I had to pay $350 this past month and $735 this month to reach a spenddown before the sociqal worker applies for payment by the pharmaceutical J&J, which would cover me to the end of the year. How are others affording their medication coverage? I have Medicare and a medication supplement but the cost is still prohibitive. Thanks for any info. Glad to be part of this group.